Memphis zoo
Me and my kids

Yes! I decided that I want to be midnight priestess this year. eveybody thought that I look more like Elvira. My sister was cat woman- her own version of catwoman lol
Here we are- wicked sisters
Me and my kids

Me and My daughter Regina
Me and my kids

Happy Halloween St Jude

Today was amazing. I never seen so much happiness and laughter and fun in the same place. The whole St Jude was decorated. They had beach theme, and race car, and barn, and Lilo and stich ... It was colorful today. And the candy- Regina got 8 lbs of candy today. ALl the doctors and nurses were dressed up. It was lot of fun. Regina was really happy today.

Then Jennifer from AlSAC asked me to tell our stroy to group from Ca and to people from Dream home. She took us to seventh floor during the lunch time. We met some people we havent met before. People who work for St jude in Ca, LA. It was nice to tell our story to others. There were about 17 people in the room having lunch together. When I got to the part what I felt when I found out about Reginas tumor and how I had no idea what was going to happen to her or to us, I just broke down and started crying. Even some of the people in the room teared up. :) While I was crying and telling my story Regina suddenly started pulling my sleeve. Did I mention I was dressed up? I guess not. I was midnight Priestess but everybody thought I looked like Elvira. I looked at regina and she was giggling. I guess she thought it was funny the way I cryed and told the story.

It is amazing what these people are doing. It was their second time to build a dream home . this time it costed them 500 000 but they raised about million dollars. Now they are planning to build the third home. Hopefully as good as 2 first ones. Good luck to you guys getting money together .

After noon we went to the zoo. Regina was in really good spirits. She was all over the zoo. She loved seeing Panda bears and rhinos and giraffes. She is such a sweetheart. On our way back from zoo- only about half a mile from target house. She fell asleep in the car. Then she woke up and requested Mc Donalds for dinner- and of course she got what she wanted.

Tomorrow we have easy day. Just Medicine room. Then after Med room we will have dinner somewhere outside and then Saturday is all gone.

SUnday we have also med room. And then reginas Best friend from St Jude Kailen and her mom Felicia are coming over for dinner. :)

What about you. WHat are you up to ?

ps. regina was dressed up as Princess.

embarrasing moments from today...

While nurse was taking her vitals in A/T I told regina that she has to eat something because she is too skinny . She told me that since I have 2 tummys( Yes, you heard it right) , she can borrow one from me). Real nice REgina, Real nice.

Then she tome me that I was fat and she wanted to be fat with me. Ok.

Then third moment- after I told her that she has to wash her hands every time after she uses bathroom or every time she touches floor or something tirty. I wish she listened. But instead she looked at me really mean. And screamed at top of her lungs- YOU ARE A BAD MOMMY. She sounded so damn serious I just started laughing . You should have seen her face. She ment business. But luckily she shanged her mind. She decided that her hands feel much better when they are clean.
Oh Regina and your mind.

Elepalooza.

Yesterday there was halloween party here in target House. Lasagna , green beans, mashed potatoes, meatballs , fruitsalat was served. After dinner was trick or treating.

Today Elepalooza carnival. After waiting Pavilion to open its doors for 10 min, we finally got in. We stood in line to wait our turn to get some great goodies. Regina had fun. She was throwing hoops, shooting tarts and got lots of little and big prizes. It felt like christmas. And there was live music playing. After 20 minuts we decided that this kind of crowded enviroment is not the best choice for Regina- her ANC is 0 and it has been zero for 3 days. It is 8 days past her transplant and we are waiting fever to show up. WAITING!!!!

Then after we got back to hospital we saw Keitlyn- nurse pract. She told us that Regina has to get some blood today- second time this week. She got her blood and now we are back in target house just chillin and watching Strawberry shortcake video.

And there is little extra added to target house schedule. On sunday, the 31st, kids can run from door to door to ask candy and if you dont want to participate we can get DO NOT disturb hanger. i have a feeling that we wont be here for sunday. Regina is acting kind of weird and I'm sure that long waited fever will show up soon. ")

Monday

And here it is- our Halloween week. Today was one of the most successful days for us(Regina and I ). Successful meaning , Regina was really happy all day long, she bisycled around in the hospital with red little trisycle. She seemed really happy. Then she got platelets because her platelet count was little low. And of course her GCSF- she gets it every day and she also got her chemo drug vincristine. Busy but happy day.

Tomorrow we have Halloween party here in Target house. On Wednesday there is Elepalooza Carnival in Hospital. It is sponsored by Target. Target is providing each child a goody bag with Tee shirt an hat. And of course there will be lots of cames prizes and activities do do all day long.
On Friday there is halloween party in the hospital- everybody will dress up for that occasiaon- blood bank people dress up as Vampires, child life and E clinic( I belive) dress up as cryons etc. It'll be fun , but busy day.
Regina finally decidid to go as Princess- whatever. She changed her mind like gazzzziiiiillllliiioooon times. I almost got her Mulan outfit and then she sayed . NO. She does not want to be mulan. I think I mentioned that I will dress up as midnight Priestess. Dress looks really cute. Long black one with wide sleeves and attached hat. My sister will make her self look like sexycat- yeah, real apropriate. lol

My husband is still running and training . yesterday he ran 10,5 miles. He is grazy. But he is doing it for the good cause so let him be grazy. And I love him so it really does not matter if he is grazy or not. :lol

Carol- again- you made Reginas day. She received 3 packs today. And she was so inpatient she had to open 3 of them almost same time and poured them all over the floor. Thank you. She still does not understand who you really are and why you are sending her all these great goodies. I am trying to do my best explaning it to her but so far she still thinks you are angel from halloween store ( her and her imagination) . One day she will get it :) I promise.

Long day in the hospital.

Today we went to hospital 10AM and got back to Target house 6PM. She was supposed to receive some blood today but pharmacy ran behind so we waited extra 3 hours. Finally 3o'clock they had blood and she had 3 hours quiet time watching tv and making fun of me because I got so frustrated with my super Mario game. lol.

her counts are lowANC is around 1000. Platelet count is high enough not to get platelet transfusion. But her moodiness is driving me grazy. nothing seems to make her happy. Whatever I do seems wrong. Whatever I say makes her cry, Whatever I by for her( Because she wants it), it is not good . I dont know if it ever returns back to normal- our life I mean. I met some great people here and they are great support and it helps some degree to talk to others but I'm the one in the end who has to find the right solution what to do or how to behave. When she has her good days she is the sweedest girl ever. She kisses and hugs me. She sings me songs. She tells me I'm the best mommy in the whole world. And I tresure moments like that. But I wish there were days like that more. Not once a week - I want her to behave that sweet way every day. :)

My sister went to Grizzly game yesterday. She went with Fed-Ex corporate people. They had lot of fun. :) Our brother back in Estonia was really jelous, because basketball is his life. He was watching the whole game from TV. they actually showed that game in Estonian Television.

I want to go out to dancing and drinking. I really do. I'm so tired not able to do anything adultish. I can say - I'm about to began a virgin again. Ups, did I really say that? I MISS YOU HONEY!! :)

Running for cure

As I mentioned before ,My husband nick is training for ST jude half marathon. Here he explains why he is doing it. :)

http://www.stjudeheroes.org/site/TR?pg=personal&fr_id=1023&px=1008061

Round 2 finished!!!

Yeah!! We are back in target house. Reginas stem cell transplatn went really well. She did throw up once due to yucky taste in her mouth( smell is still really bad around her).

last night when I did the dressing change( CEntral line), I noticed that something was not quite right. I looked little closer and finally got it. Her line was about 3 fingertip lenghts out, but still in her vein. On sunday afternoon she startedd crying and asking for pain meds. She was screaming. Doctors came to check her because everybody knew that Regina never cryes or complains. It was big deal this time. So doctors checked her and thought she mey have some bone pains. because there was no outer sign that there was sometihing wrong with her. She got her meds , big band aid and she finally calmed down for 4 hours. Around middle of the night she woke up screaming that her back and side and everything is hurting. Nurse ordered more tylenol fom pharmacy and she felt little better after receiving it. So yesterday while I changed her line , I told nurse and i finally knew the reason behind reginas cry. Line is inside her vein and the end that is in the vein is little bigger so it wount get out so easily. Muscle has formed around the end and regina had that pulling pain sensation all over her right side and close to line. She just did not know how to adress her problem. Now she has to live with this hurting feeling until everything gets adjusted inside . Since line is still flushing and doing good blood returns ther eis no need to remove the line.

Short update.

Regina is doing great. At least that what doctors keep telling me. They tell me that she is doing much better than other bmt kids. That just warms m y heart. But the same time I see her sick , throwing up, not eating anything and just limp and lifeless and I wonder is that what doctors mean great??? If somebody would ask from me how she is doing I would say she is doing really bad- because I only see what I see and all the numbers dont tell me anything.

Day 3.

It seemed like an easy day for her. Tomorrow she gets no drugs- rest day, and on tuesday she gets her stem cells back. And if everything goes fine we get out on the same day. :)

She ate 1/3 doughnut and drank some fanta. Better than nothing. She smiled and laughed and even did some coloring. :)

Weather here is really cold. I'm not really used to this kind of weather anymore. We miss Cali.

Second day...

and she is done with chemo drugs for today. She did not get sick at all. She looks very tired and pale. Her calcium levels where dangerously slow - they gave her extra calcium . She havent had food for almost 2 days now and because of yesterday was extremely hard day( she threw up most of the day) she lost almost 1 lb . :( Hopefully it'll get better tomorrow. I want her apetite to return and I want her to gain some weight.


Carol.- thank you for all the treats. Regina had fun stamping last night . Every time I read her what you wrote her, she starts a conversation about it. You should hear her. She is to cute. Thank you so much. :)

And it has started.

Second round it is. She got really sick today. usually the first day is the worst. But this time she is much worse than she was with last round. :( She threw up for about 10 times. Now she is sleeping.

Hopefully tomorrow is better day.

My mom is in hospital

She has heart problems. Her health is not the best right now.She was hospitalised 2 days ago. I just hope that they find what's wrong and help her feel better.
She was supposed to have thyroid surgery but she refused to have it- she also has blood clotting problems, both hips replaced with artificail parts and severe depression. She is also had surgery to remove ovarian cancer and she is in lots of different meds. I just hope that she has enough strenght to recover. She is only 50 years . And hardest part is that she is in Estonia and we are in US. Only way we can help is financialy because lot of the surgerys are not covered under her plan. And sad part is - more money you have in EST the better care you get- especially in Country side. And we are from country side.

Listen to this. When my mom dad t have surgery to remove tumor/cancer doctors removed wrong part . They removed everything that was not affected with cancer. Then my moms condition got worse. She got infected and started bleeding. Came out that docs performed the surgery in unsanitised enviroment. They finally found out what was wrong. This time they removed the right " stuff". She sitll has problems from surgeryes. :(

And back to inpatient life we go again..

Regina is doing really well right now. She is like new person. Her counts are perfet her spirits are hight and her sence of humor is back. You know what that means??? TONIGHT, we are going to back to hospital and they hook her up with IV fluids. Then tomorrow will be her first day of second round of chemo. She was really upset about it. Today they check her platelets and hemoglobin one more time and hopefully everything is fine. Her ANC was 9000 yesterday- it is the best I have seen it for ages. our stay here Target house stayed short. Here we go again. Week pain and suffering is ahead of her. Hope she stays strong and meds don't make her very sick this time. I hate to seeing her sick.

My dear husband...

I forgot to mention that my dear husband is training for St Jude marathon. I'm so proud of him. He is doing the right thing helping rise money for St Jude. St Jude needs everybodys support. :) I would do the same thing but thanks for my long relationship with going to gym and training with trainer , my knees are just to weak to last that many hours of running. but I salute to everyone who is training or planning to run that marathon:)

Princess Mia

from princess Diaries 1 and 2 was here today. He spoke priefly about movie. Later he visited inpatient suites. That was really great thing to do. But of course regina acted like- I DONT LIKE HER , I ONLY LIKE YOU MOMMY. I apologised and she completely understood. IT was really nice to meet her. We did not get pic with her since REgina refused taking any pics with anybody.

We have 3 more hours left in the hospital . SHe is getting her blood now and after she is finished we are out of here. :)

Try number 2!!

AND YES!!! FINALLY!!! Everything went really well today. Immature cell count was 88 , which was the best they seen on Reginas case so far. After 4,5 h harvest we are done. Regina did really good. Around 8-9 we know if they got enough cells, but so far seems like they did. And yesterdays harvest produced enought cells 0,5 amount. WHIch is also good. And if they got enough everything we'll be out of ther tomorrow morning . I can not wait. My bed needs me and I need my bed. :)

Not so successful day :(

REgina was supposed to have her pharesis today-1)(spelling?) they will insert a femoral line and run his blood through a machine that will remove CD34 cells and parallel to that she will reveive blood. Well, well, well. She was hooked up and ready to start. . Prior to that she had extra line placed on her right thigh.

Everything was fine. Nurse flushed her lines and we went downstairs to blood donor center where she was supposed to get this procedure done. But it did not go they way they planned. Suddenly non of her lines flushed- WHAT?? lines were fine 15 min ago. SO instead of removing lines from that new line, they tryed to do it from her central hickman line- did not work. It did work, but not the way it was supposed to be working. After 3 hours of figuring out why it is not working , they gave up and sent us back upstairs. NOW, regina is stuck with that extra line for 2 more days- and that line is really bothering her- it is really close to her private parts and it hurts her.

After we were sent upstairs , the doc, who placed her line in came by to see what was going on. GUESS WHAT??? LINE was in working order- it returned blood and received blood. Nurses just did not try hard enough to get the line working. And her line( white line) had something in but now it is in working order. SO I keep my fingers and legs crossed and hopefully tomorrow they get enough stem cells .

Regina does not feel like herself today. She threw up 3 times and nobody seems to care why. It is sunday and there is not enough doctors and nurses in the hospital to answer my guestions. Dr Gajjar stepped by to see what was going on. I could see that he was upset the way things were going, but he assured me that everything will be fine.

I started crying because I was so upset over the whole thingl. I know everybody tries to do theyr best but somethimes it is not enough. They had to try harder. I know it was just the matter of nurses who were here today- they did not have enough experience - that what I believe, because When mashine did not do what it was supposed to do, they took out theyr book and started reading what should be done next. ANyway, I just wanted to let some of the steam out . Don't be mad if you happen to read this. I just have to calm down and think happy thoughts.

Di

She is almost ready for stemcell harvest.

Right now she is in procedure room and they are placing temporary line( for 2 days) inot her vein( this time it is leg). Throu that , tomorrow mashines will pull right amount of cells out. Hopefully they get enough for 3 courses, if not, line will stay in for another extra day and there will be day 2 for stem cell collection.

SHe is doing good. Her counts are ANC- 8000

Late night update.

I'm mad and tired and sick of sleeping in the hospita. Regina has to stay to hospital for another 4 days. Just because they have to monitor her counts really closely because if they reach sertain number , she has to go through stem cell collection. Because she is so small ( her weight they are worried that they dont get enought cells for 3 courses of chemo) . Now we are waiting her cells to reach higher numbers.

I'm really tired with all this waiting . It is just the beginning.

Go anc

1800!!!!!!! ANC is 1800!!1 YES!!! She still has to be 2 days on antibiotics but we'll see. If doctor comes over I ask if I can do it in Target house. :)


Julie Andrews is coming to visit Target house today !! :) She is coming to talk about PRincess Diaries 1 and 2.

wohooo again.

GUESS WHAT??? REGINAS COUNTS ARE UP!!! ANC is 500!!! If nothing goes wrong we get out of hospital tomorrow. And since her counts are moving up we'll have stem cell harvest day coming up. I allready met with the people who are doing this and was explaned what to expect.

I'm not sure about Reginas TPN. Since she started having TPN she is moodier than usual. she is very whiny. Then yesterday her TPN was late for 5 hours ( busy pharmacy) . And while she was off the TPN she was such a good girl. Then they started tpn and she is moody all over. I don't really know how to read her anymore. She is geting so many different meds and it could be side effect of any of those other things, but for me seems that it's more tpn. I think it is way to strong for her because every time she eats some food she makes a comment that she can not eat anymore because her tummy is full. So today when I go back to hospital I mention to doctor that maybe it is possible to cut down the amount she is getting so she is starting to eat?? What do you think Kathy? Did steven ever had problems with TPN??

Anyway, i allready got all the supplies for TPN homecare and seems like it is not the worst thing to do but it is just that something extra that wakes me up every morning hour earlier. SO there you go!!!

Some of you know that I really did not eat red meat anymore.( sometimes I have bite but that is it). So last night I got these really bad redmeatcraivings. So I went to caffeteria and had ribs( beef). After I ate 3 ribs I was about to throw up. It was way to fatty for me and i guess my body is not ready for fatty food. I overeat, but i overeat healty foods in unhealty amounts, and my menu is mostly fat free ( cookie, here and cookie there - only fat). If you have cabbage in your house- I"M the happiest woman on earth. So know, if I come to visit you one day- go to grossery store and buy the biggest head of cabbage you could!!!!

Second floor.

So last night we got moved to second floor. But only just because there was 2 really sick kids coming to fourth floor and the 4th floor was full. Regina was the "heatlhiest kid" on fourt floor so we got moved to second. BUT- we are still on that isolation room with doubble doors and can not leave the room before her counts raise to 400. I dont mind. Today she was little whiny and moody. She refused to eat breakfast and all she wants me to do is to play gameboy advance with her- I MEAN, i HAVE to play it. Yeasterday I ordered her dora the explorer game and princess and the Pauper videotape( in hospital there are no dvd players). So hopefully next week i get to play something new. ;)

Next to us moved a boy named Stanton with her parents. He is a brave little 3 year old with Neuroblastoma. It is his second time back. I hope his mom and dad don't mind if I share his caringbridge website. She does amazing job writing about Stanton.
http://www.caringbridge.org/la/stanton


CAROL!!!! You are amazing. Thank you so much for all the packages. You put so much thought into each pack and regina has something new to do each day. You brought tears to my eyes when I opened my pack. Thank you so much. I'm keeping all the cards you and other Reginas friends are sending her and I kind of scrapbook them in her" card" album. :) Thank you. :)

I just heard that our story got published in Estonian local newspaper. i would share it here but the paper is not online yet( it is monthly paper) and it is in Estonian, so all of you who speak English would have no idea what they are saying. But if paper finally appears online I will post a link.

Oh no :(

We have to stay to hospital until day 16-17,( right now she is on day 12 after BMT). BUT OH yes, her ANC was 100. It is better than nothing.

Only thing I dont like about hospitals is we are stuck on the fourt floor. Her only physical activity is to walk from bathroom to bedroom and from bedroom to bathroom. We can not leave the rooom. her energy and apetite are slowly returing and she wants to do stuff. But what stuff can you do if you are carring big pole with different kinds of meds and hoses are attached to you.

My back is not doing good. I'm trying to find better sleeping positions but with no success. I need real bed, and real food and my husband so I can finally fall asleep safe and worry free. :)

I miss you Gabriel and Nick. I miss getting hugs and kisses from you too. I miss hearing Gabriel sweet voice that tells me I love you Mom. I really, really mis you guys.

We know what future brings..

... but we dont know how to read the clues. I want to share a dream I had about 5 years ago. regina was about month old that time. And this dream still hunts me.

We lived close to water. Lots of water. and we had 2 story house and our backyard was facing the big, big lake. I was taking care of Regina when suddenly she was gone. I started looking for her and I could not find her. Finally I found her body but I did not find her head. There was no blood anywhere and in some weird reason I did not panick. I just kept looking and I finally found her tiny , tiny head. It was somehere in the grass- where grass was longer. I took her hairless head and I placed it to her neck. And it stayed there. It was like nothing never ever happened. And then I woke up.

When Regina was first diagnosed the dream came back to me and I knew now that 5 years ago I knew that something was going to happen but I just did not belive it.
I had lots of dreams after that that predicted my relatives death or healing or weather or even Money matters and they all have come true. I dont dream often , but if I do dream my dreams seems so real I have to wake up to make sure I'm dreaming.

In the past I had tarot cards and i had creat success, but one they when they predicted my car accident I just threw them away. Right away. I'm really curious what they would say about our life in the future. but I'm to scared to face the unpleasent news. So I just wait and see and belive in my dreams.

Just as I thought..

. We are not getting out from hospital yet. Reginas counts bounced back and her ANC is zero . Yesterday it was 100 but today it is big bat zero. Her hemoglobin is low which means she will get blood today. She seems to be doing better and better each day. she finally started eating yesterday and this morning she weighed 14,6 kilos. Up a little.

Dr Gajjar- from E clinic payed a visit today. IT was nice surprize to seeing his smiling face . Thanks dr Gajjar for taking extra time to climb to 4 th floor :D

I finally know what kind of infections Regina has in her line. One is E-coli and other is to hard to write down but both of them are easy to take care of if discovered in early stage- YES!!!!!

Fall is here and of course with fall come nice fall allergies. Yaiks. I hate sneezine million times a day. My nose looks like red potato and my eyeballs look like 2 red pool balls. hehe. I need to go to pharmacy to get some claritin to help with it.

I got a package from Nick today. I asked him to send all the Reginas letters and packages to memphis. Thank you everybody for cards. Regina got lots of cards from Angels all around USA. THANK YOU!!! She havent received them yet, but when I go to hospital I know she'll be asking millions of questions about who sent them, to they have kids, what is their favorite food. hee. I guesss I have to make up someting - I"M NOT going to lye, I just make up a little fairytale for her good. ;)

And it is Saturday.

Here am I enjoying my alone time. Hospitals are not the best places to spend the night- not even one night. I pretty much wake up evey hour- or every time nurses come in to check her vitals or chenge her meds or do whatever they have to do to wake me up . And the reclinging chair that I'm sleeping on is really not 100% reclying because somebody broke it and it only reclines a little so I really sleep sitting up. I'm sleep deprived. I need my beauty rest. But I think I have to wait until end of january to get my long waited rest. lol

Regina is doing great. We are still inpatients because they havent found out what is the other infection in her line. And they are running test to make sure the antibiotics are doing their job. She is still on TPN( total prenatal nutrition). Last night they wanted to start lipids but since lipids(fats) conain eggs she can not have them. My little girl is allergic to eggs. And because of her eggyolk allergy she can not have cerain kind of meds eather. :( She is allergic to eggs but the same time she can eat breads, and pastries that contain eggs.

last night I got her princess story book( all the shortened versions of disney classiks). And I had to read it for her I think for 2 hours. Then I had to read her dora books. She loves Dora books. And that is not it. For her birthday I got Gameboy Advance and some games. Guess what who has to play for her. ME. She just likes to watch. SO I have to play princess and pauper game for hours, and disney princesses games for hours and sponge bob for HOURs, and hours and hours. TO MANY GAMES.

We hope that tomorrow is our last day in the hosptal. And after that we take a little brake from our Inpatient life.
Take care
Di

Regina is doing better.

She is still on antibiotics and thanks to benadril and couple other meds she havent had any reactions to it anymore.
Last night they started TPN( nutrition fluids ). And seems like her apetite is startin to catch up. Today she had alphabet soup and 1/3 of cinnamon roll for breakfast and for luch she had plain spagetti. that is better than nothing.

She havent had fever for 24 hours and if there is no more fevers another 24 hours we'll be discharged maybe on saturday night or sunday morning.

Thank you guys. Seems like prayers are working. She feels better and acts more like real Regina .

AND her ANC is picking up. Today it was 100. SHe was 0 for 4 days.

So far she had 2 platelet transfusions
2 blood transfusions and lots and lots of meds to keep her going. I mentioned that she had line infection- well, she actually had 2 line infections. She had 2 forreing bodies in her line. :( But they are clearing up. and trust me, she is doing great. I saw one girl who had line infecion also and she was not doing good at all. She had fevers for a week and really limp and tired. I asked from doc how common are line infections and he sayed that every other family on this floor had line infection. so seems like they are common.



CAROL---- Thank you for packages. She loves her little treats. She has been coloring for 2 days( she told me that she would like to do more avitivies like connect the dots, or finding differences etc- little hint for you ;)